By the way, University of Maryland had nothing to do with me getting involved in this study. I found out about the clinical trials in my local newspaper and contacted the in-charge of the trials in Hagerstown, MD, who placed the ad.

Hey, look, if you have some kind of a beef with all this, why not voice it to Alba and Fasano? I have not seen Fasano since 1999 so I have no clue what you are complaining about. All I know is that I am in the study because I wanted to help in the efforts to get a means for Celiacs to eat gluten or become cured of the disease.
Here is an article by a Celiac who interviewed ALBA in january. She got more of the particulars on what the studies are for and what the outcomes could be. I suggest you read it and contact ALBA and Fasano yourself if you have technical and financial questions instead of spewing drama here that none of us can possibly answer to your liking.
January 16, 2008
A Celiac Pill: Alba Calls for Participants to Test Effectiveness of AT-1001
www.beyondricecakes.com/blog/2008/01/a-celiac-pill-a.html
PS: If Fasano earns money from a patent on a medication that helps Celiacs, then he deserves every cent he gets. Fasano has been a part of Celiac research for the ilatian government for many years and the USA was in the Dark Ages in comparison. He and a few others got Stephens and the NIH to finally look at putting money into real research here in the USA, so to me, he's a hero.

The trial I am on wanted me to document my last biopsy from 1999, which showed recovery from the 1st one done in the 80's. I also brought lab tests showing negative results from different periods of time over the past 10 years. This was to document that I have celiac disease but have recovered. I was lab tested by the researchers and found to be negative for gluten exposure and all other blood tests were fine so I got the Ok to start.
There are others on this trial who recently diagnosed by biopsy, who I believe are now on the diet during the study but I could have misunderstood the researcher on that. There are different parts of the different trials and each have Celiacs required to be on a gluten-free diet 6 months before. I believe the doctors are referring the newly diagnosed patients. I do know that there is a need on the trial for biopsy proven celiac disease'ers gluten-free for 6+ months. I was told last week that now anyone new coming in will have to be biopsied as part of the trial and that I was the last patient not required to do that. My 1999 biopsy came from University of Maryland lab and my doctors were Dr Fasano and Dr Stephen James, who is now head of NIH Digestive Diseases research. The reports discuss my earlier positive biopsy and clinical history and recivery. Pretty clear cut that I have celiac disease. I guess they now want the biopsy done as part of the research in conjunction with the lab tests.
Hope this helps.

Hi Flourgirl,
I live up near the Berkeley Springs / Hancock area and there is nothing in the way of support groups where we are. You are about 45 mins from me. If you need some support or have questions or concerns, I am most certainly willing to help by telephone and email. Maybe we can meet and go out to Outback or Carabas for a gluten-free meal periodically I have never gone out to eat at either one of them but both are in Hagerstown, a good midway spot.
Write me and lets exchange phone numbers. My email address kathinfred at aol dot com
Kathy

Yes, you are correct.
"Alba's study, the first Phase IIa trial in celiac disease and the first to assess dosing requirements for larazotide acetate, was designed to evaluate the safety, tolerability and efficacy of multiple doses of larazotide acetate in celiac disease subjects during a 2 week gluten challenge. The randomized, double-blind, placebo-controlled clinical trial enrolled 86 patients who had a confirmed biopsy diagnosis for celiac disease and were in compliance with a gluten-free diet for at least six months prior to enrollment as demonstrated by a negative serology test of anti-transglutaminase (tTG). Patients were randomized into seven drug-treated and placebo groups and challenged three times a day with gluten or gluten placebo during a 14 day period. Four doses of the oral formulation of larazotide acetate, all less than 10 mg, were given prior to each gluten challenge. Study endpoints included intestinal permeability (IP), measured as lactulose-mannitol ratio (LAMA), as well as patient signs and symptoms and outcomes, measured by the Gastrointestinal Symptoms Rating Scale (GSRS; validated in several gastrointestinal diseases) and the Psychological General Well-Being Index (PGWBI).
Clinical Findings: * In the primary study outcome, the prevention of increase in LAMA ratio from Day 0 to Day 14, the treatment groups showed a dose dependent protection from increase in intestinal permeability as measured by LAMA ratio versus placebo, however the difference was not statistically significant * In the highest dose active treatment groups of 4 and 8 mg, the LAMA ratio did not increase after gluten exposure when compared with placebo * Post-hoc analysis of change in LAMA ratio from Day 7 to Day 21 showed dose dependent prevention of increase in LAMA across the 4 and 8 mg treatment groups * Changes in PGWBI scores and anti-tTG titers were not significant over the time course of this study * An unexpected enrollment effect resulted in a fall in intestinal permeability from Day 0 to Day 7 across all groups suggesting the need for a run-in period * Larazotide acetate conferred protection from gastrointestinal symptoms as measured by the GSRS as well as from expected signs and symptoms of gluten toxicity * Follow-up studies of longer duration are currently ongoing
Safety: * There was no difference in rate of adverse events between Placebo and Active Drug Groups (46% vs. 55%) * No Serious Adverse Events (SAEs) were reported * Headache was the most common AE (reported by 17/86 subjects), with no differences among the active drug group and the placebo group * Plasma levels of larazotide acetate were below the limits of quantification (0.5 ng/ml) in all groups at days 0, 7 and 14
"Although the primary study outcome was not statistically significant, a great deal was learned about the potential effects of larazotide acetate and the secondary outcome data is very positive. Further, important new information was gained about the best way to run a celiac disease clinical trial. This trial marks the beginning of a new era in celiac therapeutics where modalities beyond diet alone have the ability to improve the lives of our patients," stated Daniel Leffler, MD a gastroenterologist from Beth Israel Deaconess Medical Center.
"We are very encouraged by the clear trend in the reduction of intestinal permeability and the signs and symptoms of gluten exposure in patients with celiac disease. We have applied the knowledge gained in this Phase IIa clinical trial to a larger Phase IIb gluten challenge study which is currently ongoing. In addition, we have recently initiated a clinical trial in 106 active celiac disease patients. Alba is committed to developing and studying new treatment options for patients with celiac disease," stated Dr. Francisco Leon, Head of Clinical Research and Development at Alba. For more information about Alba's clinical trials, please visit the http://www.clinicaltrials.gov/ web site and search for Alba Therapeutics."
I'm a lifelong celiac and decided to participate in these trials to help. I am encouraged by this drug! Everyone here who has been gluten-free for at least 6 months should consider participating in the trials, too.

Dear emeraldskies, You said you enjoy www.emedicine.com so here is a good reference on what a physiatrist is & does. They usually work in rehabilitation centers, aas well as in most state dept Vocational Rehabilitation centers. ~Kathy
Link:
http://www.emedicine.com/pmr/topic146.htm
Adult Physiatric History and ExaminationLast Updated: October 29, 2003 Rate this Article
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Synonyms and related keywords: impairment, disability, handicap, physical agents, functional abilities, activities of daily living, ADL, electrodiagnostics, neurological and musculoskeletal examinations
Physiatry (pronounced fizz ee at' tree) is the term used to describe the specialty of physical medicine and rehabilitation. Physiatry developed in the 1930s to treat musculoskeletal and neurological disorders. The American Board of Medical Specialties recognized physiatry as a specialty in the late 1940s. Currently, 6515 physiatrists are board certified, representing 9 out of every 10 physicians practicing physical medicine and rehabilitation. Practitioners of physical medicine use physical agents in the management of diseases and disorders. These various physical agents (eg, heat, cold, electrical stimulation, electromagnetic forces, traction) promote healing and recovery. Rehabilitation is the treatment process concerned with the medical, physical, social, psychological, emotional, and vocational aspects of the patient. Rehabilitation seeks to restore or maximize the patient's functional abilities. The physiatrist earns a Doctor of Medicine (MD) or Doctor of Osteopathy (DO) degree. In the US, postgraduate training in physical medicine and rehabilitation consists of 1 year of internship in medicine and 3 years of residency training in a program recognized by the American Board of Physical Medicine and Rehabilitation (ABPMR). Board certification in physical medicine and rehabilitation requires the successful completion of the 4 years of postgraduate training followed by successful completion of a formal written examination taken in the spring of the last year of residency training) and a separate oral examination (taken 1 year after completion of residency) administered by the ABPMR once a year. The physiatrist is expected to have mastered the established and evolving biomedical and clinical information applicable to appropriate clinical care. In addition, the physiatrist is expected to demonstrate strong interpersonal skills to communicate effectively with allied health professionals such as physical, occupational, and speech therapists. Physiatrists are expected to work effectively as members or leaders of a multidisciplinary team. Physiatrists practice in a variety of settings, ranging from conventional inpatient healthcare delivery systems to highly specialized outpatient clinics for gait analysis, electrodiagnostic, and pain management. In the inpatient setting, physiatrists generally are consulted when the patient has progressed to a condition of medical stability and no longer requires acute medical and nursing care but perhaps is unable to perform the usual roles of self care and mobility well enough to be discharged home. The adult physiatric history and examination provide advice on the appropriate level of rehabilitation services required to assist the patient. Providing the appropriate level of care may involve a transfer to the inpatient rehabilitation unit with functional disabilities as the basis for admission. In the outpatient setting, the physiatrist can be found in a wide variety of services. For example, physiatrists may (1) assess adult physiatric history and perform examinations for medical-legal purposes, (2) conduct general musculoskeletal examinations for sports team physicals, (3) perform electrodiagnostic studies of almost every type of disease or condition involving the musculoskeletal and nervous system, (4) use semi-invasive (ie, nonsurgical) procedures for the treatment and management of pain, (5) evaluate and assist in the design of a prosthesis for an amputee, (6) construct treatment strategies for chronic diseases such as spinal cord injury (SCI) and cerebrovascular accidents (CVA), (7) provide medical supervision and assistance to community nursing services, and (8) perform comprehensive disability evaluations at the request of referring governmental agencies, insurance companies, attorneys, or workers' compensation judges, to name a few. The attributes of the physiatrist include the ability to review and synthesize historical information, perform a focused medical and functional examination, formulate a diagnosis that correlates to the clinical findings, and construct a comprehensive treatment/management program. In summary, the adult physiatric history and examination represent a value-added service, recognizing functional ability as an important component of overall healthcare delivery.

Hi emeraldskies! I'm glad the information is of some help to you! You don't owe me anything......and I'm doing pretty good these days with the resources I have available to me now and cannot think of anything in particular I need help with at this time but I will email you should something come up. I am sure that you will come upon someone in need of your understanding or help, so just 'pay it forward' like in the movie of that name!
I am not sure if I mentioned this to you.. if so.. just ignore the following info! :
You mentioned funds being of some issue and I can relate well to that. In the event you are finding it hard to get up the money for the doc, and if you are not employed or steadily, you always have the Colorado Division of Vocational Rebilitation Services to turn to. They can help you understand your medical situation & plan out your employment future. They help you get whatever testing or medical care you need in order to know exactly what your personal needs, impairments, strengths and limitations are that impact your ability to find and hold a job on a steady basis. They will provide you with an education in a new field either through your local college, via the internet or and their work center where you can go & be trained in a vocation that fits your needs,even if you have to commute, they will reimburse your travel costs or stay at their facility..... Most states have such a center. I went thru the State of MAryland's center for a full evaluation and that was where I got the neuropsychological testing for the head injury. You'll get a complete checkup by a team consisting of a physiatrist ( a specialist in body rehabilitation) as well as testing by physical therapy for determining muscle skeletal exercose needs; occupational therapy ( to test body & hand fine/gross motor skill see if you need special accomodations to help with activities at home or on the job; speech language pathology evaluation to determine if there is a need for therapy in these areas.... and referrals to tests and specialists which are paid for and performed by providers contracted to the state. When you go, you mention the head injuries, immune problems, possible
or tested Celiac Disease, Ataxia of childhood origin. They will get you the help you get a full explanation of your medical situation and understanding of your employment future. This information might also be of help in obtaining Social Security Disability payments. This office is connected to the State office of Disability Determination Services that Social Security Administration uses to review & evaluate Disability claims. Besides the emploment help, Vocational Rehab is a wonderful advocate and a great resource for getting connected to medical resources when you don't have the money and you need the care.
Find your lcal office and tell them you would like to see if their services can be of help to you. Tell them you have multiple medical matters and past history of a head injury. Here are the links:
MAIN Page Colorado Dtste Dovision of Rehabilitation Services:
http://www.cdhs.state.co.us/ods/dvr/ods_dvr1.html
SERVICES:
Division Of Vocational Rehabilitation
Rehabilitation Counselors are trained professionals who specialize in the analysis of medical and vocational information, job placements, and vocational counseling. A rehabilitation counselor is ready to assist persons with disabilities in utilizing the variety of services available. Info on Services they deliver, how it works.
http://www.cdhs.state.co.us/ods/dvr/ods_dvr2.html
Link from main page to LOCAL OFFICES: Find the one nearest you:
http://www.cdhs.state.co.us/ods/dvr/ods_dvr3.html
Hope all goes well..post updates as you go along and I will also post some food ideas as they come to me!
~~Kathy in Maryland

Hi Emeraldeyes.. sorry about the error. FD diet should have been gluten-free diet.
Here are a few links for info on the neuropsychological testing...
http://www.emedicine.com/pmr/topic149.htm
http://www.brainsource.com/np_scrn.htm
Here is a wonderful 'Brain Map'of the functions of each area of the brain:
http://www.neuroskills.com/index.shtml?main=/tbi/brain.html
I would definately get a medical center neurologist experienced in Ataxia because they would know much about the gluten effect.. Not too many in your state, but CNI looks like the most experienced in CO. If you cannot get there, go to the switchboard.com info and link below the info from CNI and search by the largest nearby city, as the there are about 150 other neurologists in your state.
Colorado Neurological Institute
Center for Movement Disorders
701 East Hampden Ave.
Suite 530
Englewood, CO 80113
(303) 788-4600
(303) 788-8854 fax
Info from their website:
APPOINTMENTS
Our specialists are happy to discuss your individual case with you. Serious inquiries only, please. For an appointment, call 303-788-4600.
Ataxia
Progressive balance and coordination problems, known as ataxia, may result from damage to or degeneration of the cerebellum. This structure in the back of the brain is responsible for many coordinated tasks such as speaking and walking.
Recent research has revealed a wide range of cause for ataxia including more then one dozen inherited conditions.
The CNI Movement Disorders Center provides state-of-the-art diagnostic testing and care to affected individuals with ataxia.
Ataxia. Disorders of gait are quite complex. Ataxia refers to the wide based unsteady gait and coordination difficulty usually associated with cerebellar dysfunction. Table 6 lists the most common causes of ataxia. It is important to recognize that some ataxic gaits are due to proprioceptive sensory deficits. These may occur with cervical stenosis and compression of the posterior columns of the spinal cord, vitamin B12 deficiency, neurosyphillis, malabsorption syndromes, and inherited conditions. Modern neuroimaging with magnetic resonance imaging (MRI) and genetic testing have revolutionized our ability to diagnose ataxia. Treatment of reversible conditions, such as B12 deficiency, is obviously the primary goal. Symptom management with physical therapy and oral medications may be beneficial. Genetic counseling is recommended for appropriate cases.
Table 6. More Common Ataxias
Sporadic Ataxias
Cerebellar injury (stroke, trauma, etc.)
Alcoholic degeneration
Hydrocephalus (obstructive)
Normal pressure hydrocephalus
Multiple Sclerosis
Toxin exposuresInherited Ataxias
Freidreich’s Ataxia
Spirocerebelar Ataxia (Types SCA1-7)
Vitamin E deficiency
Ataxia - Telangiectasia
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
If that is not workable, follow these instruction to locate one in your area:
Go to:
http://www.switchboard.com/
Look for business search.
Type in the name of the closest large city near you and CO for the state.
Type in business category: Physicians & Surgeons-Neurology
Click search
~~~~~~~~~~~~~~~~
Hope this is helpful...... and I hope trying some new meal ideas will open up your list of choices. If I recall anything else, I will write back!
~~Kathy

Hi Emeraldskies, yes I did have blood tests taken and the thyroid tests normalized. I still get checked yearly for TSH to make sure it does not creep back up on me but it's not been positive since early 1987.
Your head injuries could have produced complications that you hav acomodated yourself to but which make dealing with life more difficult. Have you ever had neuropsychological testing done? It is facinating and the results and recommendations after the testing can open up a whole new world for you....
A psychologist specalizing in testing can do these. This for me was the definative help that gave me hope and understanding years later after I had forgotten about the injury. You should have had followup testing after you recovered, so if you have not, I suggest you look into it. The neurologists hardly know anythng about the less dramatic neurological problems like neuropathy or memory..... but the testing will show the problems.
I have seen various neurologists over the years..... originally in my adolescence & tens, for the seizures- which I presume were Celiac related because I was also taken off those meds sometime after Celiac diagnosis & treatment. I had all sorts of tests done but I was not informed of the results because I was a kid. I feel certain, and the last neuro I saw agreed, that the seizures were celiac disease related in the past and that the problems are resolved now ( by EEG) that I am gluten-free.
All tests done after diet- over the years-- were spinal tap, EEGs , nerve conduction studies, and neuro exams that always show mild sensory nerve damage mostly along the left side of my body, particularly my face. I failed the romberg test- balance is bad in that if my eyes are closed I lose sense of position, so I must stay alert to where I am walking and what I am doing when standing so I don't fall. I also had great difficulty with the finger test where you follow the doctor's finger action. I also have difficulty discerning certain vowel/consonant combination sounds , I struggled to spell backwards and was told I have visual memory impairment. I am glad that these problems did not progress. I had an non-contrast MRI in 1999 and it was ok. I had lots of neuropsychological tests done over the years that showed stablized mostly right hemisphere brain damage and memory & cognitive impairments from deeper areas the brain ( hyppocampus? ) . I hope to one day get a functional MRI_ a more definitive MRI where they can see how the brain is working while you are doing tasks.. but my insurance won't cover that at this time. My 'dementia' is stablized and that is all I need to know! I have a 8yr old boy 15 yr old girl and I am 51- I have concerns about getting alzheimers in the future so the docs keep an eye out for that.
On the Ataxia matter: I had a brief experience with Ataxia: Due to a medicine I was started on many years ago before celiac disease diagnosis. Stopped med and the ataxia and other side effects went away. I am limited in my understanding of it but I believe Frederich's Ataxia is genetically predisposed and starts in childhood. IA- Idiopathic Ataxia ( =no known cause) is the one associated with gluten toxicity but not all people with IA respond to the gluten-free diet. For those it helps, it is a dramatic response. I have not heard of children with celiac having Ataxia before the diet.
If you had this Frederich's Ataxia since childhoold, according to the info I read, you would most likely not be able to walk? Your neuro should be able to tell you which kind you have if he is an experienced neuro.... ps: I go to university medical centers for neuro and gastro because most docs don't have experience with complex patients like us. hehehe! Do you have a good neuro? Are you looking for one experienced in celiac disease? If so,write me and tell me what state you are in and I will help you find a good neuro.
On the Lactose Casein thing antibosies to one of the many proteins in milk is a problem.... ref: http://www.e-celiacs.org/2-Questions_and_Answers.htm
In your case, casein is the one protein in milk you cannot ingest... many foods can contain different milk proteins, so you are best to avoid all milk products. Lactose intolerance means that the body in not able to produce lactase to break down the lactose (a sugar) in milk or milk products. One would take the lactase tablets before eating dairy to help breakdown the lactose. I don't think this is a issue for you, since Casein is the problem, not lactose.... Here is a link to info on Lactose & the tablets:
http://patienteducation.upmc.com/Pdf/LactoseRestrict.pdf
Here is what I ate alot of when I was starting my FD diet and eliminating lactose ( milk products) until I healed enough:
Egg Omlets, mexican-like, with gluten-free Salsa or stewed tomatoes and any of the various combinations of: Tomatoes, Onions, boiled ham, frozen cut up peppers ( comes with onions, too), brocoli, rice, beans. Later when I could tolerate milk products, I added provolone or cheddar cheese.
Homemade chicken & veg rice soup or Beef veg rice soup which I made in a crock pot in the morning.
Baked Potatoes with small amount olive oil, topped with sauteed onions and or broccoli, hamburger meat, diced chicken. Sometimes I used salsa or tomatoe sauce as sauce on it.
Refried beans: I made my own; excellent source of protein & completx carbs.
corn tortilla's toasted lightly in toaster, like bread. and make peanut butter abd strawberry jam sandwhiches. ( have to eat at time of prep or they get cold & hard.
just some ideas.... let me know what you think. Sorry this is so long. my son is bugging me to take hm somewhere & I keep getting distracted . Take care!!
~Kathy

Hi Emeraldskies,
I was on Synthroid and was told before celiac disease diagnosis that I would be on it for life.....before diagnosis, my doctor had me switch from Synthroid to a natural ( animal) thyroxin- which did not have so many side effects as Synthroid. Because I was so ill on & off with the celiac disease, I don't recall how long I was on this stuff, or whether I was back on Synthroid by the time I was finally diagnosed with celiac disease. I was so sick of medicines & B12 shots, & not getting better overall..... that is most what I recall- and that I recovered from most of those things over time with the diet, the Iron & thyroid being the earliest to correct.
I do see a neurologist periodically, but my problems either got better or did not get any worse & there is nothing he can do but advise me to stick to the gluten-free diet. I am treated by a wonderful woman psychiatrist who knows all about Celiac Disease and she referred me to get occupational therapy & cognitive remediation. I take small amounts of the alzheimer's drug Namenda (to prevent worsening of memory and confusion symptoms) and Strattera (for poor concentration).She helped me understand my now-stable dementia-type problems. She calls my disorders Post-Vit B-12 Deficiency Dementia and Korsakoff's Nonalcohalic Amnestic Syndrome- (short term-to long term memory problems and difficulty learning new tasks- cannot remember them but in some cases I can if I over practice them.)
This comes from past extensive vit B-1 Thiamine deficiency she said. I also had a head injury during the acute phase of my malnutrition, so my brain damage is a combination of effects from deficiencies and the fall I took ( or seizure I had? not sure) while on the toilet with the runs. I was dehydrated and the floor was marble & I was in a coma for over 24 hrs I am told. I don't have any recall on this and time is sketchy... but what I have been told is that I had the double whammy of head injury, dehydration and vitamin B-1 & B-12 deficiencies at the same time. I have hardly any recall for a 2 year period before Celiac Disease diagnosis and actually forgot about the head injury until I was asked if I had had one during a try at state Vocational rehabilitation.
The long term neurological, cognitive and memory complications from Celiac & the head injury were documented by a neuropsychologist when the state vocational rehabilitation dept had me tested. I don't know how I quite survived not knowing all that I had been coping with but someone how I managed and worked for myself for years. All was well until I got ill again from eating gluten in error for a few months in 1998. I wound up with an infection in my gallbladder which spread to my blood system ( sepsis). I was hospitalized and the shrunken gallbladder removed but I was never the same. My memory problems got 10x worse and I could no longer handle tasks when distracted. I would explode in anger or tears or give up in apathy.
During this 1998 'recontamination' incident I was told that my bloodwork showed I was in a state of 'starvation' yet I had been eating food & even Taco Bell stuff for a few months ( did not know some of it was not really gluten-free and feeling 'ok'.) So after that incident , I decided to forget trying to keep up with what commercial products were gluten-free because i would probably forget to check up anyway! I went simple!
Now, did you know that it takes about 6 months for your intestinal villi to heal from a accident of ingesting gluten? Being "repeatedly recontaminated" means that you are not healing and have not allowed enough time for the gluten-free diet to heal you... which might explain why you are 'emaciated and struggling to stabilize' your weight. The casein-free diet is the lesser priority because you can take those miraculous lactaid tablets before you eat anything with lactose in it... Your intestines are gonna be uncomfortable, diets or not, until the healing is stablized.
If you like, I can give you some simple tips & suggestions gluten-free & lactose free foods I ate to get me going until I was stable, but I had a few questions first:
I was lactose intolerant & was lactose free only. Do you have a casein or milk allergy( hives, swelling breating problem reaction) or are you just lactose intolerant (intestinally only)? Can you/ do you eat eggs? Do you know about the lactose tablets?
Look forward to your reply!
~Kathy

Hi Merika, somehow I received a notice that you had replied to my post, when infact your reply quoted another post from 8/8/05. Since both posts were about cholesterol and malnutrition, I'll reply with a humble opinion...lol!
I am not sure whether the high LDL and low HLD levels would be related to Celiac Disease but it certainly makes sense that they could be because one raises or lowers the other and perhaps you were not as malnutritioned as I was when I was tested. It took many many years for me to get a correct diagnosis- I was actually on death's door by that time & I lucked out with meeting an intern in the Emergency room who knew of celiac disease & symptoms & my blood tests results because his father had it. Losing storage of vitamins and stuff takes a long time when malabsorption is the cause.... sort of like a slow death. You could have been effected to a lesser degree..
On the matter of you at 19 and being a vegetarian with celiac disease, your chance of having aB-12 deficiency was doubled... I believe Folic Acid and B-12 storages go faster than most other vits & minerals in the body, with iron being the fastest to be used up. Hope you are supplimenting B12 if you are on a vegan diet!
~~Kathy

Hi Emeraldskies,
I have always been facinated by the LOW cholesterol thing and Celiac disease because I have had this problem in the past and have also wound up with HIGH
cholesterol after the gluten-free diet, as I am genetically predisposed. Don't let the doctors lack of understanding get in the way of your health... Celiac Disease can & does cause all sorts of high or low levels of many blood tests. That's the effect of malabsorption.
The gluten- free will naturaly bring your cholesterol levels up to normal if you are eating foods that contain or convert into more cholesterol. When gluten has destroyed much of the villi, casein/lactose is also difficult to digest but eventually normalizes when the Casein-free diet is instituted with the gluten-free diet for a while.
You on a casein/lactose free diet too? The low level is due to malabsorption of fats, which gluten-enteropathy will do. I know tis because I had very low levels of pretty much evey thing including cholesterol, when I was ingesting gluten ( even ingesting it in error after the diet began). My levels went up and normalized once I got the hang of the diet and stopped eating foods that others ( including support groups info) told me was ok when it turned out to not be gluten-free.
If you are stil having issues with low cholesterol, you are not absorbing fats properly.... and if gluten is not the culprit, it could possibly be another intestinal disease because the intestines are the place where cholesterol absorption occurs.
The low cholesterol is an indicator, a symptom of other unresolved medical issues.
Before I was found to have Celiac Disease & before the gluten-free & lactose free diets, I had been diagnosed with and treated for starvation, hypothyroidism, epilepsy, B-12 Deficiency, Anemia, Folic Acid deficiency, infertility (low estrogen), rickets & osteoporosis ( low Calcium & Vit D absorption, Crohns disease, atropic gastritis, low cholestrol, Vit K- deficiency= thin blood, acute non-gallstone cholecystitis, early generalized osteoarthritis, organic brain damage ( Vit B-12 def related). 90% of these problems vanished over a 2 year period after strict gluten-free diet and initial Casein/ lactose free diet to get the intestines healed.
I won't lie to you that the 10% unresolved turned out to be long term complications. I have permanent brain damage: cognitive & memory & balance problems from the extensive B-12 & folate deficiencies and I have low but stable bone mass in the osteopenia range. I have chronic arthritis like 90 year old and my intestines never fully healed because they were so bad for so long from the gluten, but the thyroid, epilepsy, fertility & anemia issues are long gone.... and I am grateful for that. I am blessed to be alive and look at my low /high cholesterol issue as a blessing because it was one of the indicators that helped find out that I had been ingestingd gluten in error for about 6 months years after gluten-free diet & Celiac Disease. diagnosis. I hope this info is of help to you.
~Kathy

Lupus... back in 1999 it was thought that I had lupus... certain tests came back positive and I had been feeling like I was dying... exhausted, in pain, mentally unable to focus orremember things..... and I had some terrible medical emergencies, hospitalizations and surgeries because of infections and inflammation. but eventually it was ruled out.
I... on gluten-free diet for many years, was actually dying from a shut down of my body systems ebacsue of the effects of hidden gluten in my diet and a family propensity to autoimmune disease. I took bad advise from supposedly seasoned celiac disease'ers and did not check on my own or eliminate when in doubt a few foods that slowly knocked my whole system out.
Now my motto is: It ain't gluten-free unless you have investigated it personally.
My other motto is : I put my faith in God and not in recommendations of others on what is and is not gluten-free... If you would like to learn more about the possible traps of living on a gluten-free diet from celiac disease'er who has lost most of her intestines and requires tube feeding, let me know and I will hook you two up for a good lesson.
Interestingly, I had none of the original or classic ususal celiac disease features or symptoms during that relapse, so of course no one thought it was related to celiac disease until after some permanent damage to my small intestines and my brain occurred.....I am so grateful to God that I am still alive and can live to tell this.
Getting back to Lupus:
As a result of that upsetting, confusing and fearful journey, and as ill as I was, I learned pretty much all you can know as a layperson about LUPUS because I wanted to know for sure and know what the heck I could do about it... the many many lab tests and what they mean, the symptoms and what not... and I am sure I can direct you to the right info if I cannot answer you myself. I can tell you, however, it is not considered an associated disease of Celiac..... hardly anyone with Lupus gets celiac disease or visa versa. studies have been done..... so your gluten-free diet or lack of it is not related to Lupus. Lupus is an animal all it's own. I can tell you that I am still an autoimmune case waiting to bloom, and I have family members who have been diagnosed with other rheumatic diseases and I do see a rheumatologist, a neurologist and other assorted docs and I am considered disabled because of organic brain impairments they THOUGHT were related to Lupus and celiac disease, but I do not have Lupus after all. I have inflammatory issues that cause problems, like my supposed celiac disease related 'Enterpathic Arthritis', which are partly treated with Vioxx and other anti-imflammatory stuff... and I am stiill ANA + but nothing further is positive and my issues cannot be put into a direct diagnosis, so it's not Lupus.
I can be of help onlyunderstanding and perhaps some guidence. My Rheumatologist/Immunologist is at University of Maryland Medical Specialties Center at the hospital and he is very on top of the celiac disease and autoimmune issues...
Do you have celiac disease and Lupus, and are you getting coordinated care at a major medical university center? .....
Let me know how I can be of help.
~Kathy from Md.

Hi... here are some articles on the diet, endoscopy & biopsy problematics .
There are some diseases that have similar biopsy evidence but all seem to be worse to have than Celiac Disease.....so let's pray for your recovery. And like I said, beware of misinformation about the diet...... I've been on gluten-free diet since 1986 and I have an extensive education in it and have never heard about there being an original diet or any subsequent standard guideline-recommended diet.
I suggest you contact the CSA and see if you can get a copy of their Handbook which includes a historical perspective on impoprtant conceptual & diet recommendation contributions that resulted in the current understanding and treatment of Celiac Sprue Disease
Here is a good article from some of the top experts in celiac disease:
1)
All that scallops is not celiac disease.
Shah VH, Rotterdam H, Kotler DP, Fasano A, Green PH.
Department of Surgical Pathology, Columbia University College of Physicians and Surgeons, New York, NY 10032, USA.
BACKGROUND: Scalloping of duodenal folds as well as a mosaic mucosal pattern, decreased folds, and increased vascularity are markers of duodenal mucosal injury, the most common cause being celiac disease. We have recognized scalloping in patients with a variety of conditions other than celiac disease. METHODS: Clinical, endoscopic and histologic data were reviewed from selected patients with endoscopically visualized scalloped folds along with testing for endomysial antibodies. Biopsy specimens were examined histologically for villous:crypt ratio, intraepithelial lymphocytes, and inflammation. RESULTS: Thirteen patients with scalloped folds underwent endoscopy for the following reasons: family history of celiac disease and osteoporosis, gastrointestinal bleeding, dyspepsia (2), B(12)/ folate deficiency (4), and diarrhea (8). Histologic examination was abnormal in all but 1 patient. Villous atrophy or flattening as evidenced by reduced villous:crypt ratio was seen in 11 of 13 patients. Other abnormalities were edematous or broadened villi (10), intraepithelial lymphocytosis (7), and infiltration of lamina propria (6). An infectious organism was identified in 6 patients (46%). Celiac disease was excluded by the lack of specific biopsy findings combined with endomysial antibody testing. Final diagnoses were normal (1), eosinophilic enteritis (1), giardiasis (1), tropical sprue (4), human immunodeficiency virus-related diseases (6) including human immunodeficiency virus enteropathy (1). CONCLUSION: We conclude that scalloping is not specific for celiac disease but rather a predictor of mucosal disease as evidenced by villous atrophy, widening, and edema.
PMID: 10840307 [PubMed - indexed for MEDLINE]
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Can see actual abstract at:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids=10840307&dopt=Abstract
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Here is yet another expert written article about what to do when the patient is truely not responding to the diet and celiac disease is the correct diagnosis
2)
Etiology of nonresponsive celiac disease: results of a systematic approach.
Abdulkarim AS, Burgart LJ, See J, Murray JA.
Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, Minnesota, USA.
OBJECTIVES: Nonresponse or relapse of symptoms is common in patients with celiac disease treated with gluten free diet. Refractory sprue (RS) is defined as initial or subsequent failure of a strict gluten-free diet to restore normal intestinal architecture and function in patients who have celiac-like enteropathy. The aims of this study were: 1) to identify causes of persistent symptoms in patients referred with presumed diagnosis of nonresponsive celiac disease (NCD); and 2) to characterize patients with true RS. METHODS: Patients were identified who had been systematically evaluated for NCD between January 1997, and May 2001. Patient records and small bowel biopsy results were reviewed. RESULTS: A total of 55 patients were referred with a presumed diagnosis of NCD. Six did not have celiac disease and had other diseases responsible for their symptoms. Diarrhea, abdominal pain, and weight loss were the most common reasons for evaluation in cases of NCD, whereas weight loss, steatorrhea, and diarrhea were the most common presenting features of RS (nine patients). Of the 49 patients with celiac disease, 25 were identified as having gluten contamination. Additional diagnoses accounting for persistent symptoms included: pancreatic insufficiency, irritable bowel syndrome, bacterial overgrowth, lymphocytic colitis, collagenous colitis, ulcerative jejunitis, T-cell lymphoma, pancreatic cancer, fructose intolerance, protein losing enteropathy, cavitating lymphadenopathy syndrome, and tropical sprue. CONCLUSIONS: Based on this study, we conclude the following: 1) gluten contamination is the leading reason for NCD; 2) of NCD cases, 18% are due to RS; and 3) alternative diseases or those coexistent with celiac disease and gluten contamination should be ruled out before a diagnosis of RS is made.
PMID: 12190170 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/entrez/query.f...0&dopt=Abstract

Hi, thanks for the reply. If your positive blood tests of a few months ago were in the positive range, were the total's significantly lower than the original test results, or about the same or higher? It is important to compare them to see if progress is occuring.
I ask because they should have been lower if indeed your diet had been 100% gluten-free.
That is a good thing that your doctor is on top of this and you have been tested again ( & by different labs). These figures should be significantly lower than than second set, or at best, negative if you are not ingesting gluten. Let us know what the result are and what the doctor suggests, next.
I would advise you ( and all other new Celiacs) to never rely on verbal information from other patients on what foods are gluten-free & not. Educate yourselves constantly on food ingredient terminology and go to the manufacturers directly for verification. Many people on these boards and lists have a bad habit of relying on after-the-fact symptoms to determine if an error occured in what they have eaten. This is not a valid way to treat our disease. There is much confusion and drama attached to this diet for some and it spreads like wild fire to the uninformed. When in doubt, don't eat it. And always keep in mind that we are so blessed to have a treatment that cures, complicated as it can be. If you need to, have a dietician help you plan your meals and keep a log of all that you have eaten if the tests come out positive again so you can isolate the impostor food and get rid of it in your diet.
I say this from personal experience. I have had many complications from not being diagnosed for many years and after diagnosis in following the advises of others on what to eat without verifying it for myself. After my diagnosis in 1986, I thought I was gluten-free for many years, following lists and newsletters that were not always up-to-date. I am paying the price for that and you will too.
It takes personal persistence to get this diet right and keep it right. I can see that you are motivated. Good for you! But beware of false statements about foods being ok to eat when they are not or are no longer ok to eat. Educate yourself everyday on the diet if you can because it is too easy to slip and err. We've all made mistakes and I am happy that this forum is here to help each other to help stay on the right path to good health. Keep in contact here, ok? ~kathy
You wrote:
My bloodwork was repeated again last week, actually twice, so I could get 2 different laboratory perspectives on it! I should get results soon. I had it repeated it once since the diet a few months ago, and was still in the positive range for the disease. Now, after 6 months totally gluten-free, I'm hoping all signs of the disease are gone, so I'll know this diet is helping me. I gained weight right away after going gluten-free, but in return got a whole host of additional symptoms. I've never heard of that happening before, lucky me, I seem to be the unusal case!

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Celiac.com was founded in 1995 by Scott Adams, author of Cereal Killers, founder and publisher of Journal of Gluten Sensitivity, and founder of The Gluten-Free Mall, who had a single goal for the site: To help as many people as possible with celiac disease get diagnosed and living a happy, healthy gluten-free life!